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To post this about Tourettes.

(35 Posts)
wombatsandaplant Fri 15-May-20 12:31:57

I know I’ve posted this before but it’s Tourettes Awareness Month now, May 15th to June 15th, and I think more people need to be aware.

As it’s now Tourettes Awareness Month I thought I’d post this. Some of may have read this already as I’ve posted in a different format a few months ago.

Tourette’s is a neurological disorder that is inherited usually. There are rover 300,000 people in the uk living with Tourette’s. Tourette’s is characterised by involuntary movements and noises called tics. This can be anything from a shoulder shrug, to an arm flail, to a sniff or a shout. It can also mean swearing (this is called coprolalia, but only 10% of those with Tourette’s will swear (I am one of the 10%). Tics can occur in nearly every muscle in the body. Tics usually start in childhood and vary with severity, sometimes they can be worse and other times they will be better.

Vocal and motor tics (the two types of tic) can cause pain and discomfort. This is both through the premonitory urge and through doing the tic. A pre monitory urge occurs frequently but not always. This is an urge that occurs before a tic. It can be a feeling of pressure build up to a tingling sensation. Sometimes there is no premonitory urge and the tics just happen with no warning.

Tics can sometimes be suppressed for a short time, not everyone can suppress though and it can be very difficult to suppress. Think of like blinking, you can stop blinking for a short time but soon you will have to blink.

Tics can be anything. Motor tics can be anything From arm shrugging to jumping, from finger waggling to head jerks. Vocal tics can be anything from whistling to shouting, from phrases to to a hum. Some tics can be amusing. One of my favourite tics is ‘donkeys are the new unicorns’. Tics can be in context to completely out there.

If anyone has any questions please ask away.

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TamaraDeLempicky Fri 15-May-20 12:38:49

Thank you so posting. I wish my DS's teachers were aware of this.

Yellowcakestand Fri 15-May-20 13:21:17

My 12 year old niece has been diagnosed with Tourette's recently. It has built up over time as she got older. Started off with a bit of flapping as a toddler (DB and DN have autism so we are used to this) then accompanied by feet rubbing on floors, raising arms, clicking and noise making.

wombatsandaplant Fri 15-May-20 14:46:32

Infographics I made

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wombatsandaplant Fri 15-May-20 19:10:36

Bumpity bump.

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PrincessPinkGin Sat 16-May-20 00:02:30

I've never been diagnosed with a tic disorder but I take medication for them. I have one which affects my eyes and I usually have to tell people who I don't know in advance that I'm not rolling my eyes at them. Thankfully it's settled down a little with an increase in dosage. It gets a lot worse when I'm stressed. I have had different tics since I was a teenager.

catwithwhiskers Sat 16-May-20 00:11:18

Thank you for posting, this is a very insightful thread. My DP has an involuntary shoulder shrug and his DF also does this but it is a bigger movement. I'm curious, how is someone diagnosed with Tourette's?

Notenoughchocolateomg Sat 16-May-20 00:21:33

It's great to make awareness OP. My son is ASD so hand flaps, does things repetitively. There was a time I thought he may gave tourettes too. Different needs to be embraced more. My son is so different to his peers and he's absolutely the most amazing human!

Notenoughchocolateomg Sat 16-May-20 00:21:51

Have*

wombatsandaplant Sat 16-May-20 11:48:45

@catwithwhiskers you need a referral to a neurologist who then may do an mri scan to eliminate other possibilities before giving a diagnosis. I think psychiatrists can also diagnose but usually they don’t have much experience of tic disorders to be able to diagnose.

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CatRamsey Sat 16-May-20 12:15:22

Thank you for this.
I've not been diagnosed with anything to do with my tics (although I do have OCD) but mine are bloody awful especially atm.
Frowning causing frown lines, twitching the side of my nice, stuttering to myself, high pitched squeak, and many more... Most of the time I forget about them because I'm so used to it but at the moment they're really taking over.

The worst thing is adults staring. If someone asked me about them I probably wouldn't mind, in fact I'd respect that more. But when adults just stare... You wouldn't stare at someone with an obvious physical disability would you!!

So once again, thank you flowers

CatRamsey Sat 16-May-20 12:18:41

Oh also to add, I always used to get in trouble at school for 'rolling my eyes!'

And almost got removed from an GCSE exam because they thought I was talking to the person next to me.

How I wish I could back and make them realise.

wombatsandaplant Sat 16-May-20 13:43:54

CatRamsey I used to get into trouble for rolling my eyes at school too, all the bloody time. Was vast majority of the time a tic.

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rosiepony Sat 16-May-20 13:47:27

If you were the woman in the Rotunda cafe in Brighton a few months ago, I thought you and your family were lovely and that you are very pretty.

confusedofengland Sat 16-May-20 14:17:18

There is a kids' fitness coach called Jump Start Jonny who has Tourettes & recently did a question & answer session on it for kids. I'll see if I can find the link. Ah, here we go, it's on his FB page www.facebook.com/jumpstartjonny/videos/267317044677024/

NeutralJanet Sat 16-May-20 14:26:32

I've watched a few of Lewis "QBall" Nickell's videos on YouTube, he seems like a smart and articulate young man who isn't afraid to be open about his condition.

Apparently there's a show on BBC IPlayer about him, if its still there (the article is a couple of years old now) but I'll have a look for it sometime when DD isn't around (Lewis has the swearing type of tic).

www.bbc.co.uk/bbcthree/article/8846e4a4-94e2-4466-a9ab-3ef75b7f5320

Classiccar Sat 16-May-20 14:31:41

Whilst not strictly about the verbal part of Tourrettes, these two are fantastic at covering the physical aspect and in my opinion should be in every school and nursery:

These books are AMAZING, cannot recommend highly enough. A lot of adults would do well to read these too!

Ricky the Rabbit and his Dancing Hands
m.youtube.com/watch?v=9C_3SvtUN2s

What makes me special by Elizabeth McKinney
m.youtube.com/watch?v=ffj0sTMn0yU

FerneGreene Sat 16-May-20 14:33:01

Hi @wombatsandaplant. I hope it's Ok to ask this.. what do you think of the portrayal of Tourettes on the Channel 4 program "Undatables" (if you've seen it)? Is it representative do you think?

wombatsandaplant Sat 16-May-20 15:36:57

@FerneGreene I quite like the undateables and I think it portrays it okay. But I think some people get annoyed because it focuses on those who swear as part of it, which it’s only the minority of those with Tourette’s who do. But overall I think it does quite well. And obviously those who swear are more likely to encounter difficulties dating so the programme represents them more.

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Aisforharlot Sat 16-May-20 21:04:25

Thanks OP.
I have ocd with comorbid tics, though the tics are undiagnosed.
Mostly facial jerks, blinks, screwing up face etc.
I have really horrible breathing tics that bloody hurt, those are bad on and off right now.
I find they get worse at times of stress.
Used to be so embarrassed by them.

FerneGreene Sat 16-May-20 21:32:47

Thanks wombatsandaplant

catwithwhiskers Sat 16-May-20 22:28:36

Thanks @wombatsandaplant

I think it's great that your raising awareness, I've learnt a lot from reading this thread that I didn't know

Mollymalone123 Sat 16-May-20 22:57:28

My husband has tics- never been diagnosed with anything but I’ve always assumed Tourette’s

They appear when he watches tv or a screen and he is tired or stressed.Mainly sniffing,kicking his legs and cracking his knuckles, clearing his throat and yes to the eye rolling!
Well done in spreading the word

AntiHop Sat 16-May-20 23:00:44

Thanks for sharing op.

9While9AndImWaiting Sat 16-May-20 23:23:22

Thanks for sharing.
I have autism and adhd and as part of this I am obsessive compulsive, have physical tics (lesser) and I can't remember what the lady called what I do, it's related to echolalia but it's unintentionally picking up on accents and manners of speech of those around me. People tend to think I'm taking the piss, but I can't help it.
It's important and I think not enough people know enough about tourettes.

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